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“Without drug trials, we can’t move forward”: One patient’s hope to participate in the ubenimex trials

Six years ago, Barbara H. was at the doctor’s office for a physical exam. At age 54, she was more concerned about her cholesterol than anything else; little did she know that would end up the least of her worries.

“I see it’s been a few years since you’ve had a PAP,” her doctor noted.

“Yes,” Barbara responded sheepishly, a little embarrassed by her own noncompliance in getting the yearly exam. “I’ll get around it.”

“Promise me you will make an appointment within the next few weeks,” her doctor said, looking her straight in the eye.

She promised. Today, she thanks God that she did.

Barbara’s PAP showed she had Stage 1b2 cervical cancer. She ended up having a radical hysterectomy that included the removal of twenty-four lymph nodes, and one round of chemotherapy and radiation.

After her surgery, Barbara sent her doctor a thank-you note.

“Had he not pushed me, I can honestly say I would not have gotten the PAP test,” Barbara shared. “Maybe I would have gotten to it a few years down the road. And who knows what stage the cancer would have been by then?”

Coping with a post-cancer lymphedema diagnosis

When she finished her cancer treatment, Barbara was thrilled.

“I was so happy to be done,” she said. “Happy to be hopefully cancer free, and to put all this behind me. A warrior had made it through – yay!”

But a month after finishing treatment, Barbara noticed her left leg was swollen. After doing some internet research on her symptoms, her husband said, “I think you have lymphedema.”

Barbara went to her radiation doctor for a checkup, where the diagnosis of secondary lymphedema was officially confirmed. From there, she was sent to a lymphedema therapist, where she did complete decongestive therapy and learned how to manage the lymphedema on her own.

“The therapist could educate me, but it was my job to take care of it,” Barbara said.

“I felt like a ton of bricks had just fallen on my head. I just beat cancer and now I was told I have a lifelong condition. I cried and cried.”

Following her lymphedema diagnosis, Barbara cycled through the stages of grief: first denial, anger, depression, and then – finally – acceptance.

“It took me a while to get to acceptance, but once I did, I felt like a warrior again,” Barbara said. “I was not going to let it ruin my life. I was going to make the best of it.”

Barbara joined a couple online support groups where folks living with lymphedema share their experiences, information, and encouragement with one another, and suddenly she realized she wasn’t alone in dealing with this.

“That’s a huge comfort, and it’s inspiring to see how hard so many work every day to live their life as full as they can with this condition,” Barbara said.

Barbara has her good days and her bad days both physically and emotionally, but through it all she tries to stay proactive and maintain an attitude of acceptance around her lymphedema.

“Having lymphedema is no fun – I realize that,” she continued. “But I am still here. I am still mobile and enjoying life as best as I can. I’m done crying ‘why me’ now.”

She told them her story and her desire to participate, and Dr. Quan said they would look into it. Shortly thereafter, she was contacted for a screening appointment.

“God put me in the right place at the right time, and I plan on making the best of it,” Barbara said.

“I will proudly do my part to hopefully help myself and others down the road, and I hope others will follow,” Barbara said of the study. “I’m lucky to have the free time to commit to the study. Six months may seem long to some, but to me it’s a drop in the bucket of time. Having lymphedema 24/7 for the rest of my life – heck, six months is short!”

Whether she gets the drug or the placebo, Barbara doesn’t really care: she just wants to be a part of the process. To her, participating in the study is a way to participate in the progress of science and help others living with lymphedema.

“Without drug trials we can’t move forward and find help, so if I have to endure a few tests, that’s OK with me,” she explained.

Her passion for participating in progress is rooted in something deeply personal. When Barbara was a teenager, her older sister was diagnosed with leukemia. While very sick after a round of chemo, she had told young Barbara that if she could be the guinea pig and help somebody else down the line by going through the cancer treatments, she was more than happy to do so.

Over forty years later, Barbara has held her sister’s words close to her: “She was the bravest person I knew.”

“My family is so supportive of my wanting to participate, and are looking forward to the journey,” Barb said. “If I don’t make it into the trial I will be sad, but grateful that I tried and was given the opportunity.”

A trip to Stanford

In mid-September Barbara made the trip to Stanford University, where she was thrilled to meet with Dr. Stanley Rockson about her eligibility for the study.

“My first meeting went well,” Barbara said. “Dr. Rockson is very nice.”

“He looked me over and did a quick exam, and said I looked like a good candidate,” she continued. “He said that the dye test – called a lymphoscintigram – sometimes doesn’t show blockage in people with lymphedema, and we’ll have to see how I do.”

They were unfortunately unable to schedule her for the dye test the following day as originally planned, so she’ll have to wait until her next appointment in early November for that. (Barbara and her husband are going on vacation in October, or else she would be going back sooner.)

Even without the lymphoscintigram, though, the visit was still a busy one: she signed all the necessary consent forms, gave about six vials of blood, a urine sample, and a chest x-ray. They also sent her to a medical supply store, where she was issued a new pair of thigh-high compression garments that she now wears daily.

“I was in and out in a few hours,” Barbara said. “I hope the rest goes that smoothly!”

While there, Barbara was given a tour of the offices at Eiger BioPharmaceuticals. The tour was graciously organized by Tristen Moors, their senior director of clinical operations, who Barbara had met previously at the fundraising walk along with chief medical officer Dr. Joanne Quan.

At lunch, Barbara joined Tristen and Dr. Quan for a “Lunch and Learn” event, where Eiger employees were given the opportunity to ask Barbara questions about what it’s like to live with lymphedema to help them better understand the importance (and impact) of their work from a patient perspective.

“I think it showed commitment by all three – doctor, patient, and biopharmaceutical company working together,” said Barbara of the educational luncheon.

She was able to fit a little fun into her trip, too: Barbara’s daughter had accompanied her to the screener, so the two of them were able to get some sightseeing in during their visit, taking the train into nearby San Francisco and Redwood City.

“All in all it was a nice experience, and I’m looking forward to the next one in November,” Barbara said. “If I get in, it will be a monthly trip up there, ending in May. Fingers and toes are crossed.”

Pending the results of the current ULTRA study, Eiger is planning additional studies of ubenimex for lymphedema — so even if you aren’t eligible for the current study, you may be in the future!

Before you make the decision to participate in any clinical trial, it’s important to educate yourself first on what it means to participate so that you can make an informed decision (the NIH is a wonderful resource for this!).

We’ll be following up with Barbara in November after her next appointment, so stay tuned for another “Barb Blurb”!

Alexa is a writer, book hoarder, and cat enthusiast from Baltimore, MD. By day, she works in the marketing and communications department for a large health system; by night, she runs The Lymphie Life. Learn more about her here!

1 comment on ““Without drug trials, we can’t move forward”: One patient’s hope to participate in the ubenimex trials”

Getting past the onset must be worse knowing you beat cancer and lived yet ended up with something no one cares to actually cure.
I have been lucky to have lymphedema for only 41 yrs, I am going to be 51 next month.
As I get older I find myself doing more to take care of my leg….(juicing, less alcohol, exercising regularly).

I am one not to bet on a drug helping me without some sort of side effect like lymphedema from Cancer treatment.

I am not a woman, most days, but do hope you forget about dealing with it and live your life as if you didn’t have lymphedema. I do feel females would deal with more critical aspects, shoes, skirts, dresses and such.

Use it to take a break and elevate, get a massage, an Epsom salt bath or just get off your feet for a while.
Lymhie Life has given me a renewed vigor to take more care and also to realize, there are a whole lot of us out there.
Good luck Barbara….compression daily
ROB